Sickness

Changing the Conversation on Disability

The politics of disability used to be about achieving equality and inclusion as contributing citizens but in 2010 the welfare reforms changed everything. The charities, supported by a whole host of new generation sick and disabled activists have ripped up the equality agenda and replaced it with a list of demands that see disabled people as naturally inferior beings unable to work, who need benefits, pity and cold hard cash to be swept under the carpet rather than included in society.

The current disability conversation is destructive and hostile, and for any future (Labour) government to get an handle on this hysteria over benefits, WCA and ATOS by disabled people and the charities exploiting the situation, they must change the conversation. Firstly, they must eliminate the notion of being unfit for work, which has enabled the pity seekers to get massive attention. I would therefore propose that they scrap WCA, which I have believed for some time without pressure from anyone else.

My suggestion is not because it has failed to define who is notionally fit or unfit, but because it is an unworkable notion as everyone has human potential and can with the right support at some point make some level of meaningful contribution, which is not saying everyone can work 9 to 5. The process has also failed miserably in recognising and supporting the emotional journey of coming to terms of newly acquired impairments and preparing to make a contribution to society.

At the same time, I would scrap DLA, PIP, Direct Payments, Personal Budgets, Access to Work and others monies paid to disabled people and/or carers, and replace them with one single outcome focused need led individual payment covering everything a disabled person requires in terms of additional costs, assuming the use of Universal Credits for household income. I strongly believe disabled people should get exactly what they need when they need it to become contributing citizens.

To implement this properly, it needs to be assessed in a new way and therefore while I intend to work with ATOS to improve the immediate situation, I would scrap the big assessments contracts given to ATOS and others. I would replace them with locally commissioned small specialist interdisciplinary teams, which are matched to people’s specific needs at given times. These teams will be more responsive and will use discussion rather then formal assessment to meet people’s specific individual needs.

This new system would not be interested in medical labels and will take people at face value, looking instead at what is their exact additional needs at that time because of their impairments based on their outcomes, what they intend to do, in terms of work, education, raising a family or fulfil other important roles. The pressure to prove difficulty will be removed and it is then about explaining precisely what they need because of their difficulties.

I feel if these suggestions were properly implemented that it would quickly move the conversation on disability back to equality and inclusion, where the role of the state is to enable and empower individuals to reach their full potential. It will support so many sick and disabled people currently trapped in the grieving process of coming to terms with their situation, and enable them to complete their emotional journey in a less stressful relationship with the state. By meeting exact individual need when it is needed, it will avoid label based compensation where a fixed amount creates winners and losers. Since many sick people may have no additional needs to what is provided already to them, it puts the onus on them to prove what exactly they need which they would then easily receive.

I feel this is how the next Labour government will go, simply to diffuse the situation, as well as moving away from a dependency culture and allow disabled people to be regarded as equal citizens with the same rights and responsibilities as anyone else. I feel it will be very hard for charities and activists to argue against this way of thinking without revealing their true intentions of keeping disabled people dependent. The conversation of disability must change and I feel my ideas represent a good first stab in trying to do this.

Is Solidarity an Excuse for Disabled People Not to Work?

As someone who was born with cerebral palsy, I discovered the old ‘disability movement’ when I went to University at 18 in 1992. I quickly saw this unelected and unaccountable body as a way for a minority to dictate to the majority. I quickly understood the Solidarity others find so precious was actually quite oppressive. The needs, voice and rights of so many disabled people have been excluded, especially those with severe impairments and learning difficulties. But the movement’s actions won us civil rights, if nothing else, that we have all benefited from. I however always seen myself as an individual who has a right to think for myself and escaped from the self segregated oppression demanded from me by the movement.

The old movement has been all but dead for a number of years as its generation of activists have been institutionalised into the system they supposedly once fought against. But in 2010, the welfare reforms created a new ‘sick and disabled’ movement where we were now called to stand together to fight against ‘cuts’ that are yet to materialise in any meaningful way, and help sick people to, well, have the right not to work. This movement is very interesting as for the most part it does against everything the old movement was asking for. Inclusion and liberation has been replaced by exclusion and victimhood. I know it is hard to see but let me explain.

I fundamentally believe everyone should get what they personally need to be active and equal citizens able to fulfil their social responsibilities, which could include paid work. In this context someone with a mild form of diabetes will need less resources to support them than someone which severe cerebral palsy. Further, as the built environment, attitudes and policies improves some people with impairments, and we all have some kind of impairment, will become less disabled on a minute by minute basis, and some will no longer be disabled, compared to 20 or 30 years ago.

But this is not good news for sick people or those with minor impairments, because it is likely the current system of benefits means they get more than what they really need. I have tried to find out what some sick people really need and told to mind my own business as they avoid my questions and so leading me to conclude they do not need much. They need solidarity and a collective identity because they need to piggyback on the public perceptions of disabled people to cash in on the higher average need of disability. Since disability is so hard to define, it is so easy for people to cash in to what they see as people receiving benefits, cars and so on. But they do not want the real prejudices and discrimination that comes from being disabled, being outraged at what is normal for us.

The main trick of many sick people who do not wish to work is to imply they face the discrimination of the so-called average disabled person in terms of inaccessible transport, employer’s attitudes (apparently) and cost of living when they do not actually personally face these barriers. Since the identity of sick people is often created by medical professionals and many have not come to terms with their conditions, they will believe impairment is a negative thing and transfer that onto other disabled people, making sick people a big problem to the positive inclusion of traditional disabled people.

The situation is made worse as many sick people are mollycoddled by health professionals telling them what they can not do and so they are then not ready to face the hard nosed world of DWP and Atos, who are simply interested in whether they are fit for work rather than their emotional journey to work. This is where they need to piggyback on the collective identity of disabled people, pointing at people with cerebral palsy and others saying ‘I am like them and they can’t work’.

And this is where I am a problem for so many sick and disabled people, because I do work in my own way as a disability consultant. And while they may not see it, I am ‘sick’ from a nerve virus four years ago as well as having mild bipolar. So I show there are no excuses, especially when they are unwilling to explain how they are personally and specifically unable to do ANY kind of work, despite blogging 20 hours a week that they can not work!

So I say it is time to end the illusion of solidarity of disabled people and let us be the unique and wonderful individuals we are, who can all work in our own ways, rather than being chained together wallowing in the doom and gloom of self-segregation.

Follow Simon Stevens on Twitter: www.twitter.com/simonstevens74

– If you like what I say, have a look at my website at http://www.simonstevens.com or follow me on twitter, @simonstevens74

Sick people used to get better

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As well as being a state of being, sickness is also an activity that society requires people to do in exchange for being financially supported while they are unable. The goal was and I would hope still remains of any sick person is to get better or reach a state where a condition is as stable as it can be and manageable. I must however wonder whether the lure and dependent on benefits, emotionally as well as financially, has lessened the motivation to do so?

 

Long term sickness is treated very similar to impairment in terms of benefits and services which can create an emotionally stability that is attractive and can be internalised as a right, when it is not the case. Clearly, many sicknesses has no cure and it is the attitude of the individual that can determine how positive they are in reaching a more fruitful final destination.

 

People need support to understand what sickness is, rather left to embrace a failure to take action.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  

 

What happened to rehab?

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With all this talk about sickness and disability, I must myself what happened in the notion of rehabilitation? I know as a huge supporter of the social model I never thought I would be interested in rehab but I someone went through the process four years ago, after fighting for it, I understand what it is really about. When it is probably done, it is less about trying to cure people, when that is not possible in a reasonable manner, and more about supporting people to reach their maximum potential.

 

I fear too many sick people are being left on the scrapheap without proper opportunities for rehabilitation and so left unnecessarily dependent on benefits, particularly those with drug and alcohol addictions. These forgotten people are often further neglected when their children are turned into young carers, a odd situation where this country accepts child abuse, offering the child a holiday once a year from the abuse they are experiencing.

 

Rehabilitation needs to be put back on the agenda for the sake of individuals and society, as people should have the right and responsibility to reach their maximum potential rather than be left on the scrapheap.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  

 

The sick are not special

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In the last three years, born out of the welfare reform, has been a minority movement building to redefine long term ‘sickness’ as a special kind of impairment that does not fill into the rights and responsibility of the social model, but wish instead to call for new social policy based on a tragedy model as they say people with major impairment can of course work, but because they are so special, their often minor impairments mean they clearly can not. They argue they support of course the rights of disabled people to exist but not at the expense of them seeking pity. They seem to be happy to steal the benefits of being disabled without accepting the consequences.

 

Disabled people fought against the sick role to be considered valid citizens who can work but the sick is fighting against the sick role to define their right not to recover and return to work. They are happy for fit people who are recovering to be nastily be declared unfit with all the notions of invalidity that goes along with that, assuming there is a notion of being unfit. While they create a list of impairments and labels they wish to declare unemployable and excluded from society, the reality is their conditions do not make them special.

 

WCA is not broken but society”s attitude towards the employability of people with all impairments is. I am not allowing the pity seeking demands of someone who think they are above the mechanics of society, as a special oddity, to destroy the public’s acceptance of the social model and therefore my right to exist as an included member of society.

 

If you like what I say, have a look at my site at www.simonstevens.com or follow me on twitter, @simonstevens74, or even leave me feedback on +44 (0)121 364 1974 or email simon@simonstevens.com  


Wellbeing is a new concept


While wellness is now seen as a basic human right, it is actually a relevancy new concept in the history of mankind and it is certainly a product of the 20th Century and the creation of the NHS. The century saw a unhelpful belief that science could cure anything and this saw the rise of the medical model, which sees those who are not well as rejects of society.

But before the 20th Century, sickness will just a part of life. People had to simply get on with it and still work, create and contribute. If the current middle class attitude fuelling the ATOS haters of anyone with any level of sickness or impairment are naturally unemployable and inferior, no one person would have working. There will be no inventions, no social reform, nothing because we would have convinced ourselves of our own demise.

Those are thinking they have a right not to take responsibility  because of some health labels, are suggesting by their moaning that people like Stephen Hawkings and 1000s of disabled people who do work like myself are in fact unemployable and should be thrown on the scrapheap along with so many historic figures. People should of course be supported but we must stop this attitude of weakness wrapped up in ‘rights’ that goes against the true spirit of mankind, determination.

If you like what I say, have a look at my website at www.simonstevens.com or follow me on twitter, @simonstevens74

Sickness and the Social Model


I have heard to said by a few people like ‘sickness’ as opposed to ‘impairment’ does not fit into the social model because the experience of sickness is ‘so much worse’. I believe this is incorrect and somewhat arrogant on many levels.

Its firstly assume impairment is easy and ‘can be fixed’ by the social environment and that is not the case. The social model removes barriers, not just physical barriers but all barriers, that create disability, it does not remove impairment. Each impairment will have their own hidden effects which people without that impairment which not understand nor need to know about.

In this way, there is no difference between impairment and sickness, especially when there is ongoing effects. The social model can make a difference for people with many impairments beyond physical access. It is about employers changing their workplace culture to enable people to work at home or in a way that makes the most of their abilities, and so on.

While the social model does not deal with pain and sickness, it also does not and never did deal with any impairment. The way we manage our conditions is often a private matter and we can never assume we are the only person ever to suffer. It is however about building a life for ourselves where we can best manage what we need and it is always better to do that with a positive attitude as we reach an acceptance of who we are.

If you like what I say, have a look at my website at www.simonstevens.com or follow me on twitter, @simonstevens74

The insults from the sick



Recently my blogs have been receiving comments from people who define themselves as ‘sick’ as well as my usual band of not-so-nice fans, and it is interesting the insults they feel impelled to give me. None of the insults upset me and more likely amuse me as they often demonstrate the prejudices they have for real disabled people in the way claim they have.

They firstly frame the total experience of disability in terms of their limited understanding of impairments and so regard a severe impairment as something like not being able to walk from the bedroom to the bathroom without falling over. This just puzzles me to why they do not use a wheelchair, because oh the humiliation.  I would be so very interest to see that faces of these people who were confronted by real disabled people, who could not speak, had severe learning difficulties or were totally immobile  or all three. And how they would look in the face of a working real disabled person and say one of their many sob stories.

I have been called lucky I have a obvious impairment, like I have care, lucky I feel I can work and just luck I am not sick, without asking me anything about my situation. I had sickness wished upon me as well as abusive ATOS assessments and ofcourse cuts in my care. And these are the secret army of activists who know claim they represent all disabled people.

I will keep writing my stuff and the wonderful yet unimaginative insults can just keep comes as it just proves  to me how dangerous these people are for real disabled people.


If you like what I say, have a look at my website at www.simonstevens.com or follow me on twitter, @simonstevens74

The sick’s dislike of disabled people


I have been carefully observing the language that is being used about disability and the welfare reforms. Now I am coming to conclusion that there is a dislike of disabled people by many people who are ‘sick’. 


I define someone who is sick as someone with a long term condition that may have had an initial period of instability where someone was unfit for work but is often management in the long term where no social care support is required. Despite the claims the government is targeting disabled people, the reality is these are the people in its sights, people who have managed health conditions.


Now as a result, people who are sick, who often described themselves as people with hidden impairments are often often obsessively jealous for disabled people who look the part, accusing them of having it too easy and I am often been called ‘luck’. It totally ignored the everyday discrimination people like myself face and the fact unlike them, I can not turn my impairment on or off when it suites me.


This dislike is of course on top of the medical model prejudices sick people will both internalised and put upon disabled people, expecting disabled people to feel as negative about themselves as they do. So as they assign themselves to the scrapheap, they also assign everyone they perceive less able than themselves to the scrapheap as well, and then they wonder why I may have an issue with them!

Disability is very sick


Many regularly readers will understand that it is no surprise that I feel the issue of disability is very unwell right now. The battle between the medical and social models of disability is greater than it has ever been but too many people are not understanding what is going on or indeed what side they are on.


This government has upset people who are on sickness benefits but they have taken the battle on as disabled people to add more weight to their cause, pushing real disabled people out of their own movement and turning the concept of rights from a social model concept into a medical model one.


This has created confusion and frustration as people start to realise that maybe user led charities do not represent many disabled people any more and disabled people are left on the metaphoric streets wondering what the hell is disability now as they see sick people claiming to represent them without any real insight.


The public are left none the wiser about this change of management except a greater concern and fear that they will be arrested or verbally abused if they say the wrong thing to anyone as they are expected to know someone has an hidden impairment and have some red carpet already prepared.


I can just hope disability can and will recover from this sad period for the benefit of everyone.